some days when the stress is great and i feel down, i watch " john and kate plus 8" on TLC, i mean cmon...6 kids that are 2 and 2 that are 6years...yea they got stress! so it makes me feel better. some days i read this...
Welcome to Holland
by: Emily Kingsley
I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared the unique experience to understand it, to imagine how it would feel.
It’s like this... When you’re going to have a baby, it’s like planning a trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum Michelangelo’s "David". The gondolas in Venice. You may even learn some handy phrases in Italian.It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, "Welcome to Holland". "Holland?!" you say. "What do you mean Holland? I signed up for Italy! I’m suppose to be in Italy! All my life I have dreamed of going to Italy"
But there’s been a change of plans. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. You must learn a new language. And you will meet a whole new group of people you would have never met.
It’s just a different place. It’s slower- paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say "yes, that’s where I was suppose to go. That is what I had planned. And the plan of that will never, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
the family
Saturday, August 9, 2008
Tuesday, August 5, 2008
sleepy day
its been a busy week, i guess its not too bad, our nursing hours have changed, so we only typically have a night nurse now, but thats the best time for one i guess, cause zach gets lots of meds at night...7pm, 9pm, 11pm, 3am and 5am. but i miss the day nurse for the errands and doctor appointments, its okay though once we get it all settled out with insurance we will be okay.
i was just thinking today how far we have come. hence the pictures, before zach was born, at one day old and one about a month ago..i need to download new pics i know.... i took zach to the doctor with us today... no nurse, it was an appointment for chance to check on his asthma, and anyway after that we went to buger king to let the kids play, and eat, i was starved. it was a nice outing, zach was well behaved and things were going really well....then we had an embarrassing moment...is that the right phrase? maybe awkward is better. anyway i picked zach up and was holding him when his medicen port that was still attached to his gtube from his belly popped out...no biggy and it didnt hurt him at all, but another mom pointed it out and was like" um you dropped a part" yea a part, i wasnt sure weather to laugh or what, how many moms can say they dropped a part from their baby? she was very polite and very nice about it, but it was awkward.
school is coming up soon! mikey will be in yet another school...but hopefully it will be good. he is going into 1st grade! my big boy is getting bigger and bigger. i still have to finish getting supplies and uniforms...yep he is going to a school where they have uniforms this year..bleh? i hear it may be a good thing, guess we will wait and see. mikey seems semi ready, i am and im not. i missed so much of his kinder year due to being in houston with zach, it just doesnt seem like he should be in 1st.
the boys are doing well, they arent fighting too much, but they arent listening great either. im just happy to be home, having a new appreciation for home life, for life with all my boys and just hoping to be able to stay home with them all for a long long time......until i choose to leave them for a day at the spa.....wink wink.
time to finish dishes and laundry, if your reading this and you have a lil one, go hug him/her a lil harder and appreciate your time with them, we never know how long we have, be thankful for healthy happy kiddos and love on them a lil more.
Thursday, July 24, 2008
time to breath, reflections
Zach's surgery has been rescheduled...maybe it wont even need to be done. wouldnt that be awesome? if everyone prayed on it and Zach's body was able to re-absorb the blood into his body rather than his head, and he didnt need surgery? just a thought. hint hint. its 1213am, the house is soooo quiet, its wonderful. let me back up.
Zach's doctors came in about 3pm and told us that surgery was going to wait, they wanted to do another head CT on sunday and see the results (so see there is plenty of time to send your prayers up) and then depending on that he may or may not need surgery next week. luckily we have the luxery of a bit of time since the blood has been on his head for weeks, or months as the neuro surgery doc said, its not a rush rush thing, but it does need to relieve the pressure from his poor lil brain. so anyway me and dad switched places and i came home. it was time to be home. though dont think for a moment i got to relax...pppffttt. not till about 1030pm.
i arrived home at 5pm with boys in back seat of the van fighting...whats new? and i came in to see my house....kinda messy. in dads defense it wasnt bad, just some laundry and dishes and crums on the table and sweeping and cleaning the boys bathroom....and clearing some of the counter space. so i do this then i have to go to UPS warehouse cause there was a miscommunication for delivery...blah. so i go and guess what? the warehouse is about 20 minutes away...are you kidding me!? so i get there adn come back and its time to pick my inlaws up to take them to dinner (something my husband was suppose to do but since im home....eeehh) and by the time we get home its 9pm. time to bathe boys and brush their teeth and rest.
i sat on the computer and thought, and did some research for zach. it appears zach has been having myoclonic seziures, these are small twitch like seziures. also he has had the absent seziures, where he just stares off, and the atonic seziures, where his body goes limp. im trying my best to get on top of all this lingo so i can communicate with the doctors, when you know what your talking about they listen better. sooo these are the types i believe he has had. and thinking back, i think he has had these for a while. bless his heart. back in december while we were in houston at texas childrens they did an eeg on him for research i believe, anyway i asked the results and remember them saying they showed abnormal brain activities but they said there was no way to tell at that age what exactly that ment....here is my hunch...either he had blood leaking onto his brain then making him have the abnormal activites (same words they used this time to describe the seziures) or his seziures arent completely from the blood. zach has twitched for a long while, but shoot i didnt know that wasnt normal, i mean its not full jerky movement, just while he is resting and such. this could also explain why he sometimes sleeps so long...he has the post seziure stuff (cant recall words right now) and it makes him sleepy. i need to pay more attention to these areas and keep a better track.
so anyway harold registered mikey for school today, new school same district since we moved, anyway they wanted to register chance for first grade too....lol they thought they were twins...wouldnt that be a hoot,...chance in first grade at 3.5 years old. anyway this seriously gave me a chuckle today. but back to mikey, his new school has a dress code...how do i feel about this? im okay with it for older kids i guess, i understand the reasoning and such, but for younger ones i dont get it. but it will be okay. i hear it will make my morning routine easier...and i guess judging by our life...easier is better.
well its 1230am and im finally relaxed enough to think of sleep. mmmmm a real bed not a cot from the hospital, here i come bed....night.
Zach's doctors came in about 3pm and told us that surgery was going to wait, they wanted to do another head CT on sunday and see the results (so see there is plenty of time to send your prayers up) and then depending on that he may or may not need surgery next week. luckily we have the luxery of a bit of time since the blood has been on his head for weeks, or months as the neuro surgery doc said, its not a rush rush thing, but it does need to relieve the pressure from his poor lil brain. so anyway me and dad switched places and i came home. it was time to be home. though dont think for a moment i got to relax...pppffttt. not till about 1030pm.
i arrived home at 5pm with boys in back seat of the van fighting...whats new? and i came in to see my house....kinda messy. in dads defense it wasnt bad, just some laundry and dishes and crums on the table and sweeping and cleaning the boys bathroom....and clearing some of the counter space. so i do this then i have to go to UPS warehouse cause there was a miscommunication for delivery...blah. so i go and guess what? the warehouse is about 20 minutes away...are you kidding me!? so i get there adn come back and its time to pick my inlaws up to take them to dinner (something my husband was suppose to do but since im home....eeehh) and by the time we get home its 9pm. time to bathe boys and brush their teeth and rest.
i sat on the computer and thought, and did some research for zach. it appears zach has been having myoclonic seziures, these are small twitch like seziures. also he has had the absent seziures, where he just stares off, and the atonic seziures, where his body goes limp. im trying my best to get on top of all this lingo so i can communicate with the doctors, when you know what your talking about they listen better. sooo these are the types i believe he has had. and thinking back, i think he has had these for a while. bless his heart. back in december while we were in houston at texas childrens they did an eeg on him for research i believe, anyway i asked the results and remember them saying they showed abnormal brain activities but they said there was no way to tell at that age what exactly that ment....here is my hunch...either he had blood leaking onto his brain then making him have the abnormal activites (same words they used this time to describe the seziures) or his seziures arent completely from the blood. zach has twitched for a long while, but shoot i didnt know that wasnt normal, i mean its not full jerky movement, just while he is resting and such. this could also explain why he sometimes sleeps so long...he has the post seziure stuff (cant recall words right now) and it makes him sleepy. i need to pay more attention to these areas and keep a better track.
so anyway harold registered mikey for school today, new school same district since we moved, anyway they wanted to register chance for first grade too....lol they thought they were twins...wouldnt that be a hoot,...chance in first grade at 3.5 years old. anyway this seriously gave me a chuckle today. but back to mikey, his new school has a dress code...how do i feel about this? im okay with it for older kids i guess, i understand the reasoning and such, but for younger ones i dont get it. but it will be okay. i hear it will make my morning routine easier...and i guess judging by our life...easier is better.
well its 1230am and im finally relaxed enough to think of sleep. mmmmm a real bed not a cot from the hospital, here i come bed....night.
Wednesday, July 23, 2008
When hospital is like home
wow, well many of you may not know, zach had a seziure on saturday, the 19th of july (a date im BANNING from our house... last year we learned of the defect this year the seziure..) i had just come home from the grocery store and he began to twitch. we ended up calling 911 and 10 minutes later they were taking my baby to the er, the er in turn took him to the big hospital 30 minutes away....where zach spent a huge part of his life.
once he got to the hospital they ran a head CT and found BLOOD on his brain...typically this is from shaken baby syndrom or a car wreck, so of course it wasnt looking good for us. one of the docs that know us came to us to tell us she wasnt going to call CPS but another doctor may. we were devistated not only are we now facing a whole new issue but now there is thought we may have to fight CPS! im so tired of fighting.
on monday zach had numerous tests, full body xrays to make sure there were no fractures, none were found. blood and urine tests, mri, everything seemed okay. then the eeg came, it showed seziure activities. so zach was started on a seziure medication.
yesterday zach had a eye test to make sure there was no hemmoraging behind the eyes, none was found. the blood seems to be old and thats a good thing i suppose. it doesnt appear to be still bleeding. they are treating him for some pretty big infections that he probably doesnt have, but they have no way of knowing for sure since they cant do a spinal tap on him to rule them out due to the blood on his head, so they are testing him for menengitis and herpies.
the CT on saturday also revealed something we werent ready for, Zach's brain is smaller than it should be, they call it brain atrophy, and apparently it is Cerebal Palsey. wham i mean when things start hitting the fan around here they all go nuts! so this could explain zach being unable to do much motorly, no holding his head, no holding toys, no rolling. not sitting...etc. im so upset and so relieved...does this make sence? i know it may sound bad, but i "knew" something wastn right so now we know what it could be and maybe we can start working on to helping him more. also with his brain being so small there is a much more easy chance of blood entering the skull, so it doesnt have to be so tramatic to happen, he could litterally turn his head and it happen. how scary!
so the doctors want to do surgery tomorrow, to release the blood on his brain. this is quite scary for us, not only cause its a huge surgery, dealing with his head, and his 3rd surgery in nearly 9 months, but they will also have to intubate him and im worried how this will go.
Chance and Mikey are doing okay back home. they spent the first few days with grandparents and then dad was able to come home about 10 hours after zachs seziure and he stayed here with zach, now he is with the boys. i just wish we were home as a family. please pray for a smooth surgery.
once he got to the hospital they ran a head CT and found BLOOD on his brain...typically this is from shaken baby syndrom or a car wreck, so of course it wasnt looking good for us. one of the docs that know us came to us to tell us she wasnt going to call CPS but another doctor may. we were devistated not only are we now facing a whole new issue but now there is thought we may have to fight CPS! im so tired of fighting.
on monday zach had numerous tests, full body xrays to make sure there were no fractures, none were found. blood and urine tests, mri, everything seemed okay. then the eeg came, it showed seziure activities. so zach was started on a seziure medication.
yesterday zach had a eye test to make sure there was no hemmoraging behind the eyes, none was found. the blood seems to be old and thats a good thing i suppose. it doesnt appear to be still bleeding. they are treating him for some pretty big infections that he probably doesnt have, but they have no way of knowing for sure since they cant do a spinal tap on him to rule them out due to the blood on his head, so they are testing him for menengitis and herpies.
the CT on saturday also revealed something we werent ready for, Zach's brain is smaller than it should be, they call it brain atrophy, and apparently it is Cerebal Palsey. wham i mean when things start hitting the fan around here they all go nuts! so this could explain zach being unable to do much motorly, no holding his head, no holding toys, no rolling. not sitting...etc. im so upset and so relieved...does this make sence? i know it may sound bad, but i "knew" something wastn right so now we know what it could be and maybe we can start working on to helping him more. also with his brain being so small there is a much more easy chance of blood entering the skull, so it doesnt have to be so tramatic to happen, he could litterally turn his head and it happen. how scary!
so the doctors want to do surgery tomorrow, to release the blood on his brain. this is quite scary for us, not only cause its a huge surgery, dealing with his head, and his 3rd surgery in nearly 9 months, but they will also have to intubate him and im worried how this will go.
Chance and Mikey are doing okay back home. they spent the first few days with grandparents and then dad was able to come home about 10 hours after zachs seziure and he stayed here with zach, now he is with the boys. i just wish we were home as a family. please pray for a smooth surgery.
Friday, July 18, 2008
a better day
its Friday...this use to be my favorite day, i guess it still is, it always ment the begining of fun and rest at least for a few days. now granted i wont have much of that. but what i awoke to this morning? Zach wide awake, granted he was crying and mad, but he was awake. the boys were also up had been since about 5am...and no fighting. so im working really hard to have a good day myself.
i take zach to the pulmonologist today at 1, to have him looked over. im sure the visit will go okay, he may take some cultures to see what kind of infection zach has, we will see.
Happy Friday everyone! remember to wear red for the troops:)
i take zach to the pulmonologist today at 1, to have him looked over. im sure the visit will go okay, he may take some cultures to see what kind of infection zach has, we will see.
Happy Friday everyone! remember to wear red for the troops:)
Thursday, July 17, 2008
a place to release
wow, its been a long time since i was on blogger....by the looks of the last blog here it was right after chance was born and we entered our second deployment...why is it im now blogging here again at the start of another deployment...i suppose its cause there is so much tension and so much stress, more so now than with the other deployments. im coming upon the day...july 19th, last year we had our ultrasound on july 19th this was the day we learned zach was going to be a boy and the day we learned that zach had a defect, i still hate that word, congenital diaphragmetic hernia, this was a day my world stopped at least short term. i was given options to terminate, and of course i couldnt, wouldnt. but still my world stopped and part of me died, so to speak. a new part was born but that carefree person is gone, i dont regret it, but its different. this was also the day we moved into our new house on post, this house was filled with bad memories for me, the stigma that we moved there on that very day. let me tell ya im so happy to be out of that house and now into our own. we love our new house, i just wish i had longer to share it with Harold.
last week he was "in field" but able to come home at night, this week and next he is gone for the whole time, other than a few "shower runs" that last 1-1.5 hours max. im trying hard to unpack here, clean organize, get everything from old house and keep the chaos that is my life straight. mikey and chance fight from the moment they wake up until they are sleeping. most days i cant even breathe. im worried about mikey in school, but i cant even get him help here at home reading or with math, there simply isnt enough time in the day. and his concentration isnt there, i cant get him to listen to anything, he does his own thing. i had hoped the adderall or ritalin would help, but not so much. and his sleep schedule has been a mess since he was 2, he doesnt sleep. he can wake up at 3am and go until 3am the next day, sleep 2-3 hours and be ready to go again. and before someone mentions it...ive taken everything out of his room before, he plays with his hands, ive locked him in his room, nothing works, the psychiatrist thinks its a neuro issue. probably linked with his ADHD and probably inherited from dad.mikey was diagnosed at 18 months with sensory intergration dysfunction and i think this is still also playing a rol l with him, and he could benifit from some therapy assuming i can find someone around to do it. Chance has some similar isues with sleeping as well.he will see mikey's shrink doc soon to evaluate him, he has been so whinny lately and i hate that. his allergies have been flaring and i worry about his asthma, usually oct-march are his bad months but you never know. mikey is actually on medication for sleep, both over the counter herbs and prescription drugs as well, with no help. all of this combines for some long days and usually some very long nights.
today was no different, i had no time to even breathe. i realize i miss harold's help. im not looking forward to korea, not looking forward to being seperated for a year or more. and quite frankly i just dont know if im up for the challange. i feel very stressed. and though i am forever blessed to have Zach at home with us, he is a LOT of work. he is so delayed motorly that he doesnt do anything for himself and he is quite heavy, 21lbs 1 ounce to be exact. im thrilled to have him home and to watch him grow and get healthier at the same time im so tired. 6 breathing treatments, 17 medications, 4 gbutton cleanings and an 18 hour continous feeding drip each day are so tiring. im thankful for our nursing help, this is the time i run errands and clean, but when they leave its even more chaos. i know one day zach wont need all this extra stuff and it will be a thing of the past and he will be so caught up on everything, so until then this is what we must do.
i realize this is coming off as a vent, and i guess it is, but not because of my kids, just because of circumstances. i love my boys, all of them, though they are all a handful. i just wish we could all be a family together and spend more time together. our 8th wedding anniversary is next week, we wont be able to be together, our 9th he will be in korea, so maybe number 10. im just feeling overwhelmed and lonely tonight, sorry for the vent. thanks for listening.
last week he was "in field" but able to come home at night, this week and next he is gone for the whole time, other than a few "shower runs" that last 1-1.5 hours max. im trying hard to unpack here, clean organize, get everything from old house and keep the chaos that is my life straight. mikey and chance fight from the moment they wake up until they are sleeping. most days i cant even breathe. im worried about mikey in school, but i cant even get him help here at home reading or with math, there simply isnt enough time in the day. and his concentration isnt there, i cant get him to listen to anything, he does his own thing. i had hoped the adderall or ritalin would help, but not so much. and his sleep schedule has been a mess since he was 2, he doesnt sleep. he can wake up at 3am and go until 3am the next day, sleep 2-3 hours and be ready to go again. and before someone mentions it...ive taken everything out of his room before, he plays with his hands, ive locked him in his room, nothing works, the psychiatrist thinks its a neuro issue. probably linked with his ADHD and probably inherited from dad.mikey was diagnosed at 18 months with sensory intergration dysfunction and i think this is still also playing a rol l with him, and he could benifit from some therapy assuming i can find someone around to do it. Chance has some similar isues with sleeping as well.he will see mikey's shrink doc soon to evaluate him, he has been so whinny lately and i hate that. his allergies have been flaring and i worry about his asthma, usually oct-march are his bad months but you never know. mikey is actually on medication for sleep, both over the counter herbs and prescription drugs as well, with no help. all of this combines for some long days and usually some very long nights.
today was no different, i had no time to even breathe. i realize i miss harold's help. im not looking forward to korea, not looking forward to being seperated for a year or more. and quite frankly i just dont know if im up for the challange. i feel very stressed. and though i am forever blessed to have Zach at home with us, he is a LOT of work. he is so delayed motorly that he doesnt do anything for himself and he is quite heavy, 21lbs 1 ounce to be exact. im thrilled to have him home and to watch him grow and get healthier at the same time im so tired. 6 breathing treatments, 17 medications, 4 gbutton cleanings and an 18 hour continous feeding drip each day are so tiring. im thankful for our nursing help, this is the time i run errands and clean, but when they leave its even more chaos. i know one day zach wont need all this extra stuff and it will be a thing of the past and he will be so caught up on everything, so until then this is what we must do.
i realize this is coming off as a vent, and i guess it is, but not because of my kids, just because of circumstances. i love my boys, all of them, though they are all a handful. i just wish we could all be a family together and spend more time together. our 8th wedding anniversary is next week, we wont be able to be together, our 9th he will be in korea, so maybe number 10. im just feeling overwhelmed and lonely tonight, sorry for the vent. thanks for listening.
Subscribe to:
Posts (Atom)
playlist
